Hi everyone i’m not diagnosed but really need to talk to someone as i am heartbroken because of my g.p’s treatment of me.I had been waiting too see a neurologist for almost a year and my health was getting worse all the time so out desperation i borrowed what i could from family and eventually saw a neurologist who wanted me to have various tests, the first of which was an MRI scan, i had to have an open one as am very claustrophobic and this took the bulk of the money i had borrowed. I then saw him for the results which were clear and he said he wanted to run blood tests and do a lumbar puncture but knew that i could not afford this and so sent a request to my G.P for me to be re-referred on the NHS. I have now been awaiting this appointmemt since the start of year and when i call to enquire when it’s likely to be they just say when we have one available. Meanwhile i am now housebound, need help with basic needs, am in constant pain and never sleep properly so out of frustration today i emailed my consultant who has informed that my G.P NEVER RE-REFERRED ME ! So i called my g.p’s practise who informed me that my doctor was happy to review me himself periodically !!! I cannot believe it, i knew from the start that he thought i was mental and never took me seriously but i really can’t believe this !!! Can he do this ? What do i do now ? I’ve just cried all afternoon as i have been soldiering on knowing there was a light at the end of the tunnel but it’s now been taken away and i’m distraught Christy
That’s not acceptable. You could contact the Patient Advice Liason Service (PALS) and if I were you, I’d change GP. You could perhaps contact your local Adult Services, through your local county council. Does anyone have any other advice for Christy?
What can you say, suppose I was lucky in a way, 1st gp I saw did blood tests Made me get eyes checked by an optician, when they came back clear Waved me out her office like I was wasting her time, made me feel Completely cr** , did not listen. It was only after I tripped and fell Again I went to see another gp, at same practice, who agreed something Really not right with me, still waiting to see neuro but have seen 2 consultants At local hosp, lots of tests, just about everything going, inc mri, which showed multiple brain lesions including one on my spine, together with the long list of Symptoms and more or less everything they could think of ruled out Have been referred to neuro as both consultants think it is highly Suggestive I have ms. Don’t give up, find another gp, I’ve come a Long way since 1st gp, has taken a long time, & am trying not to crack up, This forum keeps me going though, hopefully you will get sorted, being In Limbo no fun. You deserve better
Don’t change your gp yet because this could delay things further for you. Ring the practice manager first and repeat what you have told us. If the manager does not resolve this issue to your satisfaction, the next step is to either change gp or request that the practice manager informs you how to take the complaint further. He/she is duty bound to do this.
Good luck x
I live in a village in argyll, I got MRI done on 13th June, results 10 days later, saw neuro 9th July, had second MRI done on 4th August, EEG getting done on 1st September and lumbar 4th September. See neuro again at end of October, but he has given me his mobile number in case I need to speak to him. I think it’s because of the area I live in that I’ve been seen so quickly, but totally understand what your going through but stay strong, I think you could write to your local MP I had to do that before for my daughter who was very ill and everything was resolved within 4 weeks because of his involvement xxxx
I am sorry that you are feeling so upset.
What I would suggest in terms of what do do next is to let off steam here or to friends and family and then, when you feel a bit calmer, turn your attention to next steps. What I would do next, I think, is to make an appt to see your GP and get to the bottom of what has been going on and what his/her take is on it all. Maybe there was an admin mess up and the neurologist’s letter was overlooked. Maybe the GP did decide not to refer you back for an LP (for instance, because he/she saw no point in putting you through the trauma of an LP at this stage when you had already had a negative MRI), and intended to talk to you about it and forgot to tell the receptionist to get you in for a consult. Or maybe you’re dead right, and the GP isn’t taking you very seriously. Until you know, please try not to jump to conclusions, though. Try to keep an open mind until you have had a proper chat with the GP.
I hope that you get somewhere with that and can reach a clear understanding with your GP about what the plans are and what needs to happen.
Agree with the comments made so far about next steps, just wanted to add it would be a good idea to take someone with you. Both for support and to make sure you get what you need out of the appointment and also so they can push harder if you start to feel emotional etc. I know I probably would in that situation. If the neuro has asked for LP etc then it is unlikely the Gp will “know better” in that situation so is duty bound to follow the recommendations of a more experience medical person. Good luck x
Thank you everyone, i have got over the shock now and have my feisty head on. I called my G.P’s secretary on Friday who sheepishly said it was being done now so i maintained my composure and arranged an appointment with the practise manager this coming week. Yesterday i was talking to my mum who told me that 20 years ago she had to makw a complaint to them re not reffering my dad 10 weeks after they said they would. So if it was an oversight that means that their practises have not improved in 20 years ! Anyway will see what the manager has to say for herself on Thursday morning. Once again thank you all very much, i’m not really sure i should if posted in an MS forum as my symptoms are more parkinsonesque but who knows, hopefully i shall find out soon. Christy
Good luck Christy. Let us know how you get on, won’t you? Take care
Well done on ur assertiveness it’s a skill I need more of too! Let us know how u go Hun, xx
First let me apologise for giving you a rather large document to read which is still incomplete but it’s the NICE Guidelines on how possible MS Patients should be treated by the NHS http://www.nice.org.uk/Guidance/InDevelopment/GID-CGWaveR115/Documents
I’ve not read all this doc. But the original in 2003 referred to patients must get a rapid diagnosis.
Two questions arise from this:
1/ Does rapid or even quickly appear in this doc (I would be surprised if it did not)
2/ Now this Government has got rid of PCTs who do you complain to? I suggest you contact your local MP.